Melissa's Kidney Biopsy Results

Regards, Renee

From: Renee
Date: Thu, 11 Dec 1997 12:23:29 EST

Dear Fellow Parents of Diabetics:

As some of you know, my (almost) 15 yr old daughter had shown evidence of protein in her annual urinalysis as far back as 3yrs prior to dx. Since a follow-up first a.m. specimen was always normal, nothing further was done & it was labelled "orthostatic proteinuria:- i.e. a predisposition to "shed" protein when upright...

2 1/2 yrs ago, Children's Hospital of Phila. was just then starting to screen pre-pubertal diabetics with a 24 hr urine collection. Despite a still normal separate first a.m. specimen - her 24 hr collection revealed about 300 mg. microalbumin. A normal excretion is 30 mgs/24 hrs. 30-300 mgs. is considered to be the earliest sign of kidney damage, so she was already at the top of that category.

She was referred to a ped. nephrologist who discussed starting her on ACE INHIBITORS (high blood pressure medication - although her b.p. is actually low at 100/60) but he was equivocating about the need for it & admitted that both his dept. and the endocrinology dept. at CHOP weren't really aggressive in pursuing this therapy, so he labelled the issue "not of concern."

At the time, I was working for a dermatologist whose hubby is an adult nephrologist, who upon hearing the scenario, added his 2 cents that the "gurus" of nephrology believe ALL diabetics should be taking ace inhibitors prophyllactically. Our closest friend, a cardiologist who had participated in the drug trials for ace inhibitors, concurred.....but in my pre-advocacy days, I opted to listen to her endos whom I felt knew best......

A year later, we left CHOP because I'd come to realize they did NOT know best - especially when it came to her insulin pump therapy (she was only the 10th pt. they had on a pump) & transferred her care to an adult endocrinologist who reluctantly took her on (usually they won't see anyone younger than 16).

As per the original directive of that ped. nephro, we followed-up with him this past June. Although all her blood work indicated "normal renal function", the level of protein had risen now to 510 mg/24 hrs - placing her in the PROTEINURIA range, instead of MICROALBUMINURIA. Hmmmmmm. NOW he definitely prescribed the ace inhibitor, starting her on Lisinopril.

Since the new meds gave her stomach aches (which would have been avoided had he TOLD us to give her the meds at bedtime) she was switched to Vasotec, but when I mentioned the starting dosage of 10 mgs to my cardiologist friend, he became apoplectic, sputtering about how with a b.p. of then 92/62 that large a dosage would cause her to pass out!!- an opinion shared by her endo. So we started her on 2.5 mgs. of vasotec & ran lab work 2 wks later to make sure there were no ill effects.

Sorry this is sooooo long, hang on!!...Labs were fine - except the protein level was now 1100 mgs & a repeat 24 hr the next wk to rule out lab error was 1225 mgs.Hmmmmmmm The decision was made to stop the meds for 2 wks & see what effect that had.

Boy DID it have an effect: On July 28th, her protein excretion was 2600mgs!!! Keep in mind that this child's A1C the previous month was 6.5....She was put back on the Vasotec & a repeat test a month later showed 1500 mgs -trending downward. By now, I'd scheduled an appt. with the top ped. nephro at the other Children's hospital in Phila, where a kidney biopsy was prescribed in order to see just what they were dealing with.

Side bar here: About this time, the JDF Countdown magazine arrived, detailing the work being done by researchers at McGill Univ. who were surprised to find very early signs of diabetic nephropathy (twice as frequent in girls for some odd reason) in pts. dx'd as recently as 2 yrs prior to the study - some younger than teen-aged - when biopsied for this study. I don't have it in front of me right now but it should be easily accessible if you want.

The biopsy was done November 21st (PR plug here for her pump which enabled her to NOT eat for 24 hours & still keep her bg in the 130-170 range all day) & the initial immunofluorescence studies came back "normal."

We were waiting ever since for the electronmicroscopy detailed studies which finally arrived. Her ped. nephro (who just came here from Stanford in August & is very "cutting edge"- even e-mails fellow ped. nephros for the state of the art news) called at 9:00 last night to tell us the following:

• Dx: very, very, very early, mild diabetic nephropathy effecting miniscule changes in the basement membrane of the kidneys
  
  
• Rx: continue the Vasotec (like forever) & attempt to gradually increase it to 10 mgs IF her b.p. will allow (will try this over winter break)
  
  
• Continue tight control so kidneys aren't overtaxed (as are all vascular organs) by high blood sugars
  
  
• Acknowledge life is a "crap shoot" - some people are just genetically programmed to develop complications no matter how good their control is (or isn't)
  
  
• Follow-up every 6 months with the ped. nephro..monitoring 24 hr urine studies
  
  
• In response to the rhetorical question: should she have been started on the ace inhibitors 2 1/2 yrs ago - "absolutely"
  
  
• The excessively high level of protein she sheds is "inconsistent" with the very very minimal changes in the kidney structure..so that's still somewhat bizarre...
  
  
• Restricting her protein intake is inconsequential & insignificant in studies done with adults
  
  
• Conversely, there is astounding evidence of dramatic declines in protein levels when ace inhibitors are given (as seen in Melissa's case when meds were stopped)
  
  
• The endo dept. at her hospital has only very recently begun screening ALL their diabetic kids for microalbumin levels to develop a baseline for subsequent comparison on annual tests
  
  
• They (endos) are adopting as standard procedure the need for 24 hr screens in pre-adolescent kids (don't forget even at 2600 mgs., Melissa's first a.m. urine check was "normal")
  
  
• In cases like Melissa's, they are now beginning to prescribe ace inhibitors

OK - got all that!!! There will be an exam arriving soon in your e-mailbox!!!! DO NOT - I repeat - DO NOT - run to the phone in a panic. I relay this info - just as I relay our pump therapy experience- to apprise you all of the rapidly expanding information relating to the treatment of children with diabetes. This ped. nephro concurred with the McGill study that no one ever thought to look for kidney damage routinely in children because end stage renal failre wasn't seen until 15-20 yrs. post-dx- if then! Now that they ARE looking, they are finding evidence of the "beginnings" of this process, although certainly not in everyone!

Is ignorance bliss? Would you rather I didn't tell you all this story? Well probably - if there wasn't anything to do about it. But, I liken it to osteoporosis: why bother getting that bone density scan if it's only going to tell you you're doomed to "swiss cheese" bones?....WHY? Because now there are new meds that have been shown to replace some of that bone loss.....So why not avail ourselves of all the CREDIBLE therapies now arising to optimize our kids' health until the day a CURE is a reality!!!

Regards to all.....I repeat - DO NOT OVERREACT to this. I strongly believe that in this world of managed-care where even the most competent, compassionate, dedicated docs' efforts are being compromised by administrative constraints, it behooves us to bring to the "table" all the knowledge we can accrue when talking to our children's doctors. Any reputable physician should be able to get past his "ego" to appreciate our interests!!!!!!!!!!

Date: Sun, 14 Dec 1997 08:34:19 EST

Dear Fellow Parents of Diabetics:

So - is your printer breaking out in a sweat at the sight of my screen name??? I'll try to be less verbose on "dissertation #2" but several of you have anxiously asked for scientific data to substantiate my story & my recommendations....

http://members.aol.com/diabtees1/info.htm#NEPH

This will take you directly to the Nephropathy listings at that new website I told you all about (one stop shopping for everything you ever wanted to know about this "gift" none of us ordered from Santa!!!)

All of the articles are pertinent - VERY current (1997)- I just finished reading them all & was not a happy camper to see that the newest guidelines dictate a THREE MONTH follow-up on a pt. already evidencing borderline levels...Gee, we waited 2 years.....Oh well, no use crying over spilled protein (corny, but a little levity helps!!! LOL)

Statistics ARE quoted in several of the articles & the point IS made about DEFINITELY screening type I diabetics over the age of 12 (at a minimum!!!) AND the point is also made that nephrologists believe ace inhibitors should be a standard treatment protocol. In fairness to Melissa's former ped endo, 2 1/2 yrs ago there were probably less available studies to corroborate this "theory."

The microalbumin test and/or the 24 hr collection are ridiculously simple tests to run - don't wait for the doc to suggest it..come to your visit ARMED with credible documentation substantiating your desire to have it run as a baseline... Better yet, for older kids, bring in the 24 hr collection without being asked to!!!.Hopefully, it will be fine, but as my previous dissertation clearly indicated, earlier intervention in Melissa's situation WOULD have been beneficial...

Good luck to all of you "pioneers"....The "treasure" at the end of this quest is hopefully having our children in the best, possible position they can be health-wise on that day a CURE becomes a reality!!!!!

Happy holidays..... Rebel-rouser Renee!!!!!

Sat, 20 Dec 1997 01:05:28 EST

Dear Fellow Parents of Kids with Diabetes:

Oh no - it's that nutty lady from Pennsylvania!!!!! OK - feel free to "delete" at this point if you've decided my saga of my daughter's kidney bx is overly-alarmist or just an aberration....If not, read on.....

I called Melissa's ped. nephro's office, seeking a referral of a colleague at Stanford (her prior post) for a parent in California I'd met on- line. Surprisingly, she returned the call herself & continued our previous discussion about the absolute need for checking all kids. She has now convinced the head of ped. endo to start screening even the toddlers & has been sent 3 referrals in the past month alone. I asked twice if she meant pre- teens, and she definitely said - "no, even the really little ones"

The on-going evidence continues to substantiate the view held by nephrologists for years now that ace inhibitors are incredibly effective at reducing protein in the urine & that these meds could/should be prescribed prophyllatically for ALL diabetics. That view is pretty radical though in the absence of any corroborating evidence. But....

Dr. Conley's endo. colleagues have concluded that the insignificant cost of checking microalbumin in a spot urine upon dx, and annually thereafter VERSUS the mammoth costs of coping with kidney damage in later years is a "no- brainer" that all doctors should be implementing.

To clarify her recommendations (and I went over this carefully with her)

1. For all children under 12, upon dx, a "spot urine" should be checked..This should be the SECOND urine of the day, after the child has been upright & mobile....Keeping in mind that my daughter's FIRST a.m. urines were always perfectly normal,(under 30 mgs. microalbumin), even though her 24 hr collection went as high as 2600 at its worst
   
   
2. If over age 12, a 24 hr collection is preferrable.....
   
   
3. If the results are normal - terrific- repeat in a year
   
   
4. If microalbumin IS present (30-300 mgs) should be re- checked in THREE MONTHS & on a frequent basis thereafter
   
   
5. Ace inhibitors should be discussed & considered with input from ped. nephrologist if results indicate increasing amounts of protein in the urine...since this is considered the earliest sign of kidney damage....
   
   
6. If you want to "read more about it", check out this List of Nephropathy sites at the Dia B Tees site for current ('97) scientific reports & suggested therapies

I'm sorry if my experience is "disturbing" but then so too was finding out that despite doing everything I could to monitor my child's diabetes, and despite A1Cs in the 7s the first 2 yrs, in the 8s year #3 (pre- pump) and in the 6's this entire past year....that Melissa now has the earliest signs of diabetic nephropathy.....

I believe fervently in being an advocate for my child's health. From the day she was dx'd, I've told Melissa that when she's a parent, I want my grandchildren (egads- what a thought!!) to be able to turn to her & say "Mom, we're so glad you took such good care of yourself when you were a little girl because we wouldn't want you to be sick & suffering & not able to do things with us now"...........Yes, it's truly "the luck of the draw" & sometimes even when you do everything "right", bad things happen.........But.....

So in the spirit of the holiday season, give yourself the "gift" of peace of mind by asking your endo or ped. to "humor you & the nutty people who tell you crazy things on-line" by running a very simple urine test.............

OK - enough said..Happy Holidays everyone.....

Renee

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